PATBI BECOMES SYSTEM-WIDE THIS FALL:
A Review of Many Successful PATBI Initiatives And of Technical Assistance and Training Available
The Human Resources and Services Administration (HRSA) is scheduled to release the money for 24 new P&A traumatic brain injury (PATBI) programs on September 1, 2003. These 24 P&As will join the 34 P&As who received funding for the program in 2002 and the PATBI program will be systemwide.TASC/NAPAS stands ready to assist P&As to build a strong TBI program. This article will describe some of the technical assistance available to P&As from TASC/NAPAS and tbitac; and we encourage you to call us and let us know how TASC/NAPAS can help you. Additionally, this article highlights some of the accomplishments made by the P&A network on behalf of individuals with TBI. TASC/NAPAS hopes to serve as a broker to help P&As identify and share expertise while tackling similar initiatives.
PATBI Resources and Technical Assistance Available from TASC/NAPAS and TBITAC:
The Traumatic Brain Injury (TBI) Technical Assistance Center (TAC) was established in 1997 to help States in the planning and development of three HRSA TBI programs. In 2000, the reauthorization of the TBI Act allowed HRSA to make grants to create P&A TBI programs. At that point, Tbitac extended their services to the P&A system as well. Tbitac offers assistance with: needs and resource assessments; guidance on building coalitions and providing culturally competent services; technical assistance related to grant administration; resource materials for families and consumers; public policy updates; and an annual TBI grantee meeting. Their website is www.tbitac.org. Some valuable resources available on the website, and already distributed to P&As who attended the July 2003 HRSA TBI training in Washington, DC, include: 1) State-by-State Summary of TBI/P&A “Objectives,” “Accomplishments,” and “Lessons Learned” prepared by HRSA in the Summer of 2003; 2) Roster of P&A TBI Program Directors; 3) TBI Project Management Guide (not specifically designed for P&As); and 4) Federal TBI Program Product List and Searchable Downloadable Education Resource Database.TASC/NAPAS learned from P&As that Tbitac is not providing substantive legal and advocacy assistance needed by the network. In recognition of this, TASC met with Tbitac to identify areas of unmet need to P&As specifically, and established a NAPAS TBI team to support PATBI staff in these areas. For example, the NAPAS TBI team provides legal support in the areas of: litigation management, Medicaid, housing, Olmstead implementation, ADA Titles II and III, access to facilities and records, abuse investigations, guardianship, institutional conditions, housing, employment, education, criminal justice, and benefits. We are working with Tbitac to ensure technical assistance and training is complementary and not duplicative. The NAPAS TBI Team also brokers information sharing within the P&A System. For example, maintaining the TBI Listserv supports this goal. The listserv is restricted to P&As only, so as to promote the free exchange if ideas and questions. The TBI/Employment Working Group run by the NAPAS, also supports this goal. The working group is comprised of P&A and non-P&A attorneys, and it provides information and peer support to attorneys working on employment litigation and advocacy for individuals with TBI. A third brokering tool being considered is the publication of a Docket of P&A cases on behalf of individuals with TBI. Currently, this cases are reported in any of six issue specific dockets published by NAPAS.
Highlights of P&A Accomplishments and Initiatives on Behalf of Individuals with TBI
This section is organized alphabetically by issue area. It highlights actual initiatives occurring within the P&a network. TASC/NAPAS has the names of P&As who have worked on each of the initiatives listed and can provide information, upon request, of who to contact for further information. Most of the these accomplishments were obtained from the HRSA TBI State Grant Profiles which was provided to all participants at the July 2003 HRSA training to P&As held in Washington, DC. These profiles are more detailed concerning P&A accomplishments than what is provided here. The State Profiles can be downloaded from www.Tbitac.org. Because these highlights are meant to inspire similar initiatives within the network, it is written as a bulleted list of suggestions.
Abuse and Neglect
* Prepare to clarify P&A authority to access records of clients with TBI, if questioned. If it becomes an issue look to Iowa Protection and Advocacy Services, Inc. v. Res-Care Premier, Inc., No. 4-02-CV-10112 (S.D. Iowa), which confirms that the PAIR Program provides the P&A the same general authorities, including access to records, as are provided under the DD Act.
* Provide training about state guardianship law, including examples of abuse as a result of unnecessary guardianship or neglect as a result of a guardians financial mismanagement.
* Challenge the failure to provide appropriate TBI supports and therapies in state hospitals and DD Centers for individuals who have a dual diagnosis of DD and TBI or of mental illness and TBI.
Collaboration With Other Agencies to Support TBI Populations
* Work with TBI advocacy groups to provide information about state legislative initiatives, such as helmet laws, improvements in TBI incident reporting, access to workers compensation, etc.
* Assist your state to apply for a state TBI planning or Implementation grant.
* Attend meetings of the state TBI Advisory Board. If there is no such Board ask the DD Council to fund one.
* Collaborate with BIA affiliates and other TBI related advocacy groups to plan and train at each others conferences.
* Develop a system with BIA affiliates and related groups for clarifying areas of expertise and service and for sharing TBI related information requests consistent with each others areas of expertise.
* form a consortium of TBI agencies and other disability advocates to identify legal and advocacy issues and coordinate materials and priorities for the TBI community.
* Adopting a resolution to create a state TBI association with national affiliation, and get broad consumer and provider support.
* Meet with staff from local and state forensic settings to provide training and literature about accommodations that might be appropriate for persons, potential areas of discrimination, and how to access local TBI service providers.
* Include representatives from the Department of Corrections on P&A TBI advisory boards.
* Train police officers about the symptoms of TBI, mention that individuals with TBI are sometimes mistakenly identified as intoxicated and arrested inappropriately for that reason.
* Work with TBI related advocacy groups to provide training on special education services with a focus on: individuals with TBI who are not diagnosed or misdiagnosed; examples of TBI behavioral modifications and accommodations; and potential areas of discrimination.
* Assemble a statewide education TBI advisory committee.
*Develop a resource guide about education supports for people with TBI.
* Make an arrangement with the state Board of Education to share information and training on TBI special education issues through the individual school district conferences, trainings etc.
* Review the states process for providing functional assessments to make sure it would identify and address the needs of individuals with TBI.
* Represent students who need computers or other assistive technology, but are denied school coverage.
* Meet with vocational rehabilitation to advise them of the services now being provided under the P&A TBI program and encourage collaboration.
* Meet with supported employment agencies and providers to discuss the new TBI program, provide information about persons with TBI, and offer examples of behavioral interventions and accommodations.
* Represent clients whose requests for reasonable accommodations are denied.
* Push for the inclusion of individuals with TBI in its existing Medicaid waiver programs, which are often restricted to only to DD populations, but in most of those programs, provides many of the same community based supports needed by the TBI populations.
* Urge the creation of a TBI Medicaid waiver program.
* Urge the state to pass legislation that would require Pre-Admission Screening and Resident Review (PASRR) screens for individuals facing admission to nursing facilities. Currently, Medicaid PASRR screening requirements only cover individuals with mental health needs of mental retardation.
* Represent clients whose requests for Medicaid coverage of medically necessary services are denied.
* Familiarize yourself, and consider the merits and detriments of filing, litigation on behalf of individuals with TBI who are on a waiting list for community based supports or are unnecessarily institutionalized. For example Bryson v. Shumway or Williams v Wasserman, etc. (See the TASC/NAPAS Community Integration Docket for a more comprehensive list.)
* Request to attend the discharge planning meetings for all persons with TBI leaving the largest statewide rehabilitation hospital.
* Visit nursing facilities, state hospitals, and DD Centers to identify individuals with TBI who would like to receive services in more integrated settings. (Consider joining with the BIA or the University Centers for Excellence who can provide medical knowledge they may help to identify an individual with TBI who may have been unidentified or misdiagnosed).
* Meet with Rehabilitation Hospitals to provide information about their program and also explain ADA integration mandate requirements for individuals facing discharge from these facilities.
* File Olmstead complaints with the U.S. Department of Health and Human Services, Office of Civil Rights on behalf of unnecessarily institutionalized persons with TBI.
* Broadcast a radio public service announcement, press release, brochure, or video announcing the TBI program and providing examples of legal and advocacy assistance individuals can obtain from the P&A.
* Provide training on TBI, potential areas of discrimination, and the P&A program to: consumers, family, institutional and community-based staff, ER hospital staff, clinics, health education centers, social workers, education officials, correctional facilities, employment agencies and businesses, the state bar, police officers, voting officials, and TBI providers.
* Prepare materials on TBI in various languages and alternative formats.
* Reach out in appropriate places to immigrant and non-English speaking populations.
* Conduct needs assessments and focus groups to identify TBI issues and community priorities.
* Create a P&A TBI Advisory Board made up primarily of individuals with TBI and their families who provide input on TBI priorities and also have an PATBI oversight and evaluation role.
Teaching Self-Advocacy Skills
* Developed an advocacy and legal rights training curriculum for use by leaders of brain injury support groups to teach at support group meetings.
* Develop a self-advocacy guidebook specifically for TBI consumers, family members and advocates.
* Develop a partners in policy making program that teaches consumers and family members self-advocacy skills and specific information about state disability policy making.